Thursday, 15 September 2016

Don't screen us out

Guest post: Lynn Murray

As a special, and long overdue, treat for my regular reader (don't say I don't spoil you), I’ve asked my friend Lynn
Murray to write a guest post. I’m not going to introduce it further as I don’t
want to detract from Lynn’s excellent words.

Lynn is UK Spokesperson for Saving Down syndromeand Don’t Screen Us Out (DSUO). DSUO was launched in January following the announcement
that the UK National Screening Committee recommended that the NHS roll-out
Non-Invasive Prenatal Testing (NIPT) despite concerns raised by Saving Down
Syndrome and others in the public consultation about NIPT.

Thanks for reading,
Paul

If people
get a glimpse of what may happen in the future, what effect does it have? Does it scare them or help them prepare? Or do they see chaos and look for ways to
avoid their fate?

I considered all this again, after
reading Dr. Kelly Cohen's item in the Huffington Post about the
about much-heralded new NIPT, an acronym, of course, meaning Non-Invasive
Prenatal Test, and, somewhat of a misnomer.
This was an article about the brave new world, the one, where it appears,
we can find out much-wanted information about our unborn children, gently
ushered through a screening system without any real inconvenience. The
Government have even played their part with the advertising of these tests, one
Minister being heard to say in Parliament that these tests have “potential to
transform antenatal care”.

Really?

You see I'm one of the ‘Down’s
syndrome campaigners’ Dr Cohen mentioned in her article, who has had to graft
somewhat this year, fighting against a well-funded, increasingly popular, idea
that we should usher in, the non-invasive world of antenatal testing,
post-haste, unquestioningly. What can go
wrong, after all? Aagh! The future!
We’ve seen the apocalyptical films and read the books. We know how this might end.

The promise of a pain-free antenatal
screening experience may mean that many more women will take-up these new tests
in anticipation of the brave new scientific world, in the hope of walking away in
the certainty that they're not going to have a baby with Down’s syndrome after
simply offering an outstretched arm for a quick ‘jab’. In actual fact
these new tests will only tell them that they 'probably' aren’t going to have a
baby with Down’s syndrome, because the new screen, as I pointed out, is not
perfect, it will still have false positive results, false negative results, and
failed screens, in the latter situation, previous screening methods may
have to be resorted to in order to provide some sort of probability.

"screening often raises needless anxiety, a low probability result abates that anxiety"

If all goes to pharmaceutical plan,
more women will choose to have antenatal screening; however, as you may already
know, the vast majority of women won't be found to be carrying a baby with Down’s
syndrome, and they never were. The Down’s syndrome lottery has few
winners. The new NIPT screening blood
test, heralded as an ‘improvement’, which could 'transform' has somewhat of a
placebo effect, screening often raises needless anxiety, a low probability
result abates that anxiety. Of those who
are found to have a high probability result, they will still need to have an invasive
test if they want to know definitively that their baby has Down’s syndrome.

Do you see why I call it a
misnomer? The Huffington Post article
tells us that post-diagnosis parents will be 'supported throughout this time’
by the prenatal system. Please note that
Dr. Cohen never mentioned that parents will be provided with information about
Down’s syndrome or counselled through the time of adjustment (great or short,
depending on your perceptions of the syndrome). No - she didn’t, and, in fact, these are some
of the issues still not addressed with the advent of NIPT, even though there is
now a well-developed disability rights framework in this country.

I understand that receiving a diagnosis
is an experience which can be emotionally painful and difficult, but, if you
stick with it, and find acceptance, you will ultimately be led towards a most
rewarding experience. This is where the campaigners come in; this is why
we've taken to the streets this year. We've, most of us, actually been there, done
that, had a diagnosis, unfortunately, for many, what they have found is that
being 'supported' has not been as liberating as it might have been if only
those delivering the news were more aware of what it can mean to live with Down’s
syndrome today or have been able to put themselves in our shoes for a time.

Dr Cohen said in her article that
many women choose to continue with pregnancy following a diagnosis, and that is
simply, not true. Following a diagnosis that a baby has Down’s syndrome, most
women choose not to continue with their pregnancy, over 90%, in fact. That's a
frightening statistic considering that we claim to be a diverse society. So,
she is correct, in that, there may not be a rise in terminations, as 9 out of
10 is already an exceptionally high and questionable figure following
diagnosis! Dr Cohen has also said that
NIPT will provide a ‘positive’ and that, also isn’t true, as I said earlier,
these screening tests provide likelihood not diagnosis. So, by all means, listen to what proponents
of these tests have to say, and then read everything you can on the matter.

"Down’s syndrome campaigners simply want a world where people are accessing a prenatal system fit for purpose"

It does appear that something is
wrong with the screening system but not because, as Dr Cohen, may have
suggested that it carries ‘a lot of emotion’ for 'Down’s syndrome campaigners'. No, au contraire, Down’s syndrome campaigners
simply want a world where people are accessing a prenatal system fit for
purpose - we’re pragmatists.

So please, dear readers, discern
well, don’t just believe the hype, do your research around Down’s syndrome (if
you’re not already living with it) and find out about the support you would
expect if the unexpected did happen. Do
you have any misconceptions about what life is like with a baby? Yes, that's
right, any baby, because, that baby is very unlikely to meet all your
aspirations, it’s best to get real about things now. Being so adjusted may mean
that you can accept and enjoy the mess and diversity of life, and, if you are
one of the rare winners of the Down’s syndrome lottery, you might get the
chance to reap the rewards that are brandished on the hundreds of Facebook
pages of those parent campaigners, the pages filled with pictures of children
with the extra chromosome and the posts too, declaring the love and joy that
families have found down that unexpected road.
These are the people who accepted the future, which is messy, but it is bright.

Lynn (centre) campaigning at Parliament earlier this year with her daughter Rachel (right) and friend Catherine.